Planned PICU Admit

Yeah, I know, it sounds weird.  But so is life. 

They're bringing Aaron into the hospital on Tuesday morning to work on his vent settings.  Since he's a little turkey who really, really likes his oxygen, we're going to the PICU.  I know, you're saying, "but it's so much fun to see different things and have multiple rooms," right?  Yeah, well, we try to not stir up too much trouble on the floor, and 12 liters of the good stuff makes them nervous.  In the PICU on the other hand, well, no one even blinks.  They just take care of business. 

So we're checking into the hospital at 10 on Tuesday, perfectly well and not struggling, and being admitted into the PICU.  Vent settings will be changed and he'll be monitored.  Ideally, it will take about 48 hours to get everything put together and make sure they'll work.  Ideally, lots of things would work.  The nurse told me it's kinda a child-driven thing.  I told her my whole world is child-driven, sometimes it's a different child, but for the last almost 26 years, my life has been child-driven.  So I should be used to it?? 

Anyway, I think I'm channeling some PTSD in advance.  This one really should be a no biggie.  Check in, change things, if they don't work, change them some more.  When everything looks good, head home.  But the reason we're getting it done is he has a heart catheterization coming up August 16th.  That one has me nervous, really nervous.

For a heart cath, they'll put him under and then thread a small tube up through his femoral artery, into his heart.  There pressures will be measured, different medications tried and pressures re-measured.  When they have all the data they need, it will be done, he'll be brought to recovery where he'll need to be still for several hours (a challenge in and of itself) so he doesn't dislodge the clot over the artery.  Then we go home.  Ideally.

But there are so many places things can go wrong.  I mean, it's a foreign body in the heart.  His already sick heart.  Kids (and adults) code, their hearts stop, from time to time in the cath lab.  It used to be that Aaron tolerated anesthesia really, really well.  Not for the past few years.  It kicks his pulmonary hypertension AND his asthma into high gear.  Plus, in order to really get a feel for how he reacts to the meds, we have to stop his heart meds that morning, the ones that I never, ever skip. 

Can we say nerves??? 

Please, please keep our little guy in your prayers over the next few weeks.  Please pray that we can find better settings on the ventilator.  Ventilators already keep the pressures in the heart and lungs higher than they otherwise would be.  We need settings that will support him, but not go beyond what he needs. 

Please pray that he will tolerate the heart cath, and that we can get good information.  If you're so inclined, pray that we'll have better results than before.  It would be wonderful if he could get to the point where he could safely have surgery, but even if it's just that it's not quite as bad that would also be great.  I know prayer works miracles.  I've seen it.  I've felt it.  And once again, still, always, we're storming heaven's gates for another one.

We'll be fasting for Aaron next Sunday.  If you're Mormon, or even if you're not and want to join your faith with ours, we'd be so grateful.  (James 5:15)  This one has me worried.  I'm trying so hard to give it over to God and have hope.  Please join your faith with ours. 

Have Defiant Hope, because reasonable hope isn't really hope.

Lisa Copen

Slumber Party!

Aaron's slumber party was last week.  He actually did sleep.  I didn't. 

This was a BYOE party:  Bring Your Own EVERYTHING.  Even though you stay overnight in the hospital, insurance considers it to be "outpatient."  That means, just like when you go to your pediatrician for an ear infection, you're expected to bring everything your child needs for the time period.  This is what Aaron's needs look like for an 8 pm to 6 am study. I'm grateful it's an "off" month for his inhaled antibiotic, or we'd have two more meds in there.

Let me tell you, hooking this kid up was funny.  TONS of wires were "glued" to his body.  They measure EVERYTHING:  heart rate, breathing rate, the amount of work it takes to breathe, eye movements, leg movements, brain waves, everything.  He thought the whole things was a riot, and was soooooo "helpful."  He was having a party!










Fortunately, he was also exhausted.  Just after they turned out the lights, he went out, too.  Me, well, not so much.  There were all sorts of noises and it was kinda warm and I also had to do his 2 am meds and nebulizer treatment.  Oh, well.  They weren't studying me and I knew I'd get a good nap once I got home.

Wait, how am I supposed to grab the wires?

They changed his vent settings dramatically.  For pretty much his whole life, he's been on what's called "volume control" settings.  With that, the vent pushes in a certain amount of air and the resulting pressures depend on how flexible the lungs are.  They changed him over to a "pressure control" setting where the air pressure remains the same and the volume of air depends on how compliant his lungs are.  Theoretically, the pressure control should be better for him, especially with his increased needs.  Possibly it will be, if we can get the right settings.

6 am.  Time to wake up.  He's not so sure.

I keep trying to tell them that Aaron does much better asleep than awake.  He needs less oxygen, less support from the ventilator, less intervention.  I guess that's backwards from where the majority of patients are.  Most of them need much more help when asleep. 

Yeah, the new settings didn't work so well.

We changed him over on Friday afternoon, after the pulmonologist had a chance to read the study.  In the back of my mind was, "is this good timing?"  Someday, someday I might learn to listen to that little voice.  Yeah, Friday afternoon, three-day weekend (Monday was Pioneer Day, a Utah holiday), might not be the best option for big changes.  The hospital doesn't like to discharge on Friday or even Thursday with big changes like putting a child on a ventilator for the first time.  They want to make sure the patient does well for those first couple days at home while it's still normal business hours. 

He's not a fan of early mornings.

He did okay at first, but in the early morning hours he started needing more oxygen while asleep.  By the time the nursing shift ended at 8:00, he was at his baseline for late in the day and well above where he should have been for sleeping.  By 10:00, I gave up.  He was on the emergency tank at 12 liters and we were struggling to stay about 80% on his oxygen.  Even more telling, he wasn't interacting much at all.  He'd slept all night, but was exhausted and not smiling.  I gave up and called the hospital. 

Fortunately, I really know my ventilator.  The on-call doctor wanted to switch him back to his old settings.  Really, there was nothing else we could do.  This doctor didn't know Aaron, has never even consulted on him.  We knew the old settings had worked, they'd worked for years.  He was concerned that I might not be able to change them back and suggested if I was at all uncertain we really needed to come to the ER and have them changed there.  I'm really, really glad I've researched and played with this vent as much as I have.  I've even been known to show some of the newer respiratory therapists how to run it and changed settings.  So I had no problem at all switching back.  In fact, by the time we were done with the phone call, it was done. 

I don't know what happens next.  I've got a call into his doctor.  We'll see if they try again with higher setting or just leave things alone.  I'd really like to be able to make the newer mode work.  It should be so much better for his lungs and his heart.  He has a heart cath coming up on August 16th, and using optimal vent settings would give us the clearest picture of his heart health.  It's not good, it won't ever be good, but it would be nice to see exactly where he stands. 

This week is another quiet week around here, but I think it's our last one.  Starting next week, we have follow-up appointments for his scoliosis, his ears, and the heart cath, all on different days, of course.  We need to get his eye glasses and his new hearing aid.  Plus there are two soccer tournaments coming up and school starting four weeks from today. 

Speaking of school, we are, yes, once again, looking for a school nurse.  It would be one to two days a week, from about 7 am to 4 pm, and he would be the only one the nurse would be responsible for.  If you know someone with an RN or an LPN certificate who wants to spend their day with this cutie, please let us know!! 

"What hath night to do with sleep?"

John Milton Paradise Lost 

Sunday Morning Musings: Fire, Fun, and Challenges

As I sit here on a Sunday morning, helicopter blades echo their "whomp-whomp" against the mountains. The house is sealed up as much as we can, and there is a sign on the front door asking visitors to please go around to the back.

These two pictures were taken at the same time: top one from
my front lawn, bottom from my back yard.

Not opening the front door.

See, the mountain is burning.  Yes, our mountain.  Yes, again.  Halfway between where it burned five years ago  and three weeks ago.  While we hope it won't be quite as bad as the first one, it's definitely more than the second.  When I went into the garage this morning, I could smell the smoke in there, and outside it's more like when you're standing near the campfire, and the wind is blowing towards you.  Yeah, not so good for already sick lungs.



We're not in California, we're in Utah, so while the fire is pretty close, (last night's nurse could see the glow of flames through the blinds) we're not in danger from the flames.  But emergency asthma protocols are being implemented and this kid isn't leaving the house unless he has to.  Sigh...

Playing with Dad at the reunion.

July has been a bit challenging so far. It's been good with family reunions and all, but we've also had a really nasty stomach bug rolling through the house, and Aaron has never been one to want to be left out of the fun.  Fortunately, a stomach bug with a g-tube and nissen and diapers is much easier to deal with than it is with a typical child.  It's just the rest of us have had it, too.  No bueno.

Parades without scary noises are much more fun.

He did get to go out to the big parade on the 4th, and Daddy figured out how to stave off those awful noises that cause him so much trauma:  noise cancelling headphones.  And he kept them on!  Score!!

He's also been to the water park and pretty much just had a great time wherever he's been.  We head up to the hospital on Thursday evening for a slumber party (aka sleep study) to make sure his ventilator settings are where they should be.

Playing in his tent at the water park.

And that med we tried to stop?  Yeah, "tried" would be the important word.  It didn't work so well.  I figured we'd know better by the weekend, and oh boy, did we.  I ended up having to bag him a few times that Saturday and Sunday in addition to putting him on 12-15 liters more than once.  So he's now back on it.  We may try to change it out for another one, we may try one more time to take him off even slower than before.  But for now, until he's had both his sleep study and his heart cath in a few weeks, we're leaving things just as they are.  I need him to be status quo so that whatever the studies show, it's with him at his baseline, not with other systems messed up and playing with the numbers.

Fun times, huh?  At least this kid keeps smiling, and reminds me to keep smiling, too.  After all, isn't the joy what really matters?

“Very little is needed to make a happy life; 

it is all within yourself, in your way of thinking.” 

– Marcus Aurelius

Summer Fun

Seven years apart.  He has GROWN!

Life has been busy, good, but busy.

Yesterday marked seven years since Aaron came home from the NICU.  Seven years.  Had I been able to look forward to today, I don't think I would have believed it.  But I remember how overwhelmingly grateful I was that he was able to come home, that we could bring him here, love him, make memories, feel his sweet spirit.  

Trying to "help" the tech.

He had his "all you can eat" appointment the day after his birthday.  Overall, the doctors are pleased with what is happening.  We discussed some different strategies regarding his asthma, maybe using an antibiotic that has an anti-inflammatory component instead of a steroid the next time he has a flare-up in conjunction with a cold.

They've discontinued his acid reflux med.  That one has me a bit concerned, but only a little bit.  The thought is that since he's doing so much better on his blended diet, and he's bigger, maybe he won't need it.  The med does a great job at reducing stomach acid, but not just in the stomach.  It reduces the acidity of the whole body, including the lungs.  Oh, yeah, those lungs.  One of his two biggest challenges (the other being his heart).  And a more acidic environment helps to deter those nasty bugs that love to live, grow and thrive, and make him sick.

Pool party at school!

This weekend should really show us if it will work.  We cut his dose in half for two weeks and then stopped it on Wednesday.  It usually takes three to four days after stopping for symptoms to really rev up.  So far, so good.  I'm not seeing anything different.  So yea for better lung health, and yea for one less medication!!

He has his cancer screenings, which came back completely negative.  We expected that, but still, when the radiologist came in to do a few of the pictures himself after seeing the initial ones, I was nervous.  Aaron thought the slimey stuff was ticklish, and really wanted to help.

Stretching in the sun.

Aaron is going to summer school twice a week.  For those who think that cuts to services really don't matter, can I just say, they do!  Two years ago, in preschool, he got a six-week extended school year, three times a week.  Last year it was twice a week for five weeks.  This year it is only twice a week for four weeks.  Eight days of summer school.  ALL of Aaron's therapies, you know, the ones that strengthen his body, teach him how to sit up, roll over, etc, are provided through the school.  So from the end of May until almost September, he'll get a grand total of SIX hours of ONE therapy (45 minute session, once a week), instead of 45 minutes two to three times a week, plus his other ones.  We do what we can at home, but I'm kinda shooting in the dark.  I don't have the skills and knowledge that his therapists do.

He also got a haircut.  We're working really hard on helping him hear better, which means wearing his hearing aid.  It's really cool!  But if anything, including hair, is touching it, there's feedback noise. My poor silly monkey.  He's really not too sure about those clippers.  But true to his nature, he bounces back pretty quick.  After a bath, he was "all better" and ready to play.

This next week will bring cousins, aunts and uncles, and grandmas and grandpa.  Lots of family, lots of fun.  Summer time:  easy schedules, lazy days, late nights.  Lots of memories.

Summer is like childhood.  It is full of warm memories and gone too soon.

Kellie Elimore

Seven Trips Around the Sun

Tomorrow is Aaron's birthday.  Tomorrow he is seven.  Today he is six, tomorrow seven.  It's kinda mind boggling.  Yeah, I know that's what happens.  We've done it eight times before with our kids.  But this kid, this child, wasn't supposed to see seven.  Heck, he wasn't supposed to see one!

And he's going to be seven.  I waffled about doing a party for him.  Birthday parties around here have usually been fairly low-key affairs.  From about age four to the middle school years, we have a family gathering and a friends party.  Most of them haven't wanted to do the friends party after that, so it kinda dies down.

 Aaron, on the other hand, had the biggest party I think I've ever seen his first two years.  As time has gone on, it's gotten smaller, but still...  And then there's this year.  I had just about decided that we'd just do a family one on Sunday, like we do for the other kids, and be done with it.  But then, in the back of my mind was the niggling thought.  "What if it's the last one?"  "What if we don't get to celebrate eight with him here with us?"  And I just couldn't do it.

So tomorrow, his birthday, the day he entered this earth life, we'll have another party.  In comparison to his first few, it will be very low key.  But I'll get him a cake, and we'd love to have people stop by.  Come wish our miracle boy a happy birthday.  It's a blessing that so many children don't get to experience, and we're grateful that we do.

He's still here, he's still growing, he's still facing challenges.  We had a hearing appointment on Friday, a vision one today, and a comprehensive, all you can eat, multi-specialist one on Wednesday.  There's so much to talk about at that one.  We'll touch on his hearing results (moderately severe to severe without his hearing aid, none to mild with it), go over the eye results we get today.  We'll talk about his nutrition, his breathing, oxygen use, frequent steroid use, and of course, the seizures I've seen.  They'll weigh and measure my big boy, and we'll go over his many meds and get refills.  We'll talk about repeating his annual cancer screenings, and I'll have a rock in my stomach until we get them done.  It will be a long day.  But that's okay, 'cause he's still here.

I put a g-tube and trach in one of his stuffed animals
for his birthday present. He's not quite sure, but has
fun poking his finger in the trach.  Which is much better
than putting his finger in his own trach!

His birthday is always a little bittersweet for me.  I remember how blue he was when he was born.  They told me to "look quick, Mom" as they held him over the drape that separated me from the c-section.  And I recognized that he wasn't breathing, there was no sound coming from him, he was the wrong color.  All I could do was smile through tears and wave at them to take him, help him, save him.  They did, although it seemed like forever before someone said he was breathing.  My children were all there, in the hospital.  We didn't know if we got minutes, a few hours, or longer, and I didn't want them to miss out on seeing their little brother.  I also remember a sweet friend whose own baby girl passed the day before Aaron's first birthday.  And there's another little boy, not quite a year older than Aaron, who has moved on this weekend as well.

I love my son, I love all my kids.  Sometimes I miss the me who took for granted that babies came home from the hospital with mom, and eight year old birthdays always followed seven year old birthdays.  But I think with that new knowledge comes a desire to hold them just a bit closer, to cherish the memories, to try to capture the everyday moments that are so perfect in their imperfection.  

So join us tomorrow if you can.  Help us eat the cake so I don't try to do it all on my own.  And hold your kids a little tighter.  

The miracle of life is enough for me to believe in miracles.

Anthony D. Williams

Living Life

Aaron made it home on Thursday.  Between steroids, restarting his diuretic (don't get me started on that one), and simple Tincture of Time, he decided that breathing was an okay activity again.  And because the one thing we know we don't know is how much time we get with this little man, we needed to make some more memories.






So on Friday, we loaded up the big van and took everyone who was available to the zoo for Dream Nights.  We've been every year since Aaron was born and as always, it's a lot of fun.  For one night, the zoo hosts families whose children are chronically ill or have special needs.



There's dinner, face painting, characters, animals (duh) and lots of other families who fight the same battles day in and day out.

Aaron had a great time!  He was a giraffe this year.  Andrew dubbed him "Jeff, the Jaff," and claimed "Puff, the Wuff" (he was a wolf) for himself.  So he's been an orange tiger (twice), a dragon, a bear, a white tiger (I think) and then the giraffe.  His first year I opted out of doing the face paint.  Still too skittish.

Waving to the lions.

It was quite the feat getting ready to go though.  This is an "off" month, meaning we don't have to do two of his inhaled meds, so that part was easier.  He ate while we ate, and I gave him his meds, except the one I managed to forget in spite of all my planning.  Then while we waited in line for face painting, we did his inhaled medications.  All in all, I took up 12 different medications, 3 inhalers and 8 syringes pre-filled.  Yep, and that's a simple three-hour trip.  Gah...



 

That handsome Sousa player is mine.

Saturday morning brought a challenge.  Joseph marches with the high school and had a parade.  Who doesn't like a good hometown parade?  Local businesses, schools, candy, fun times!

Except while I managed to keep him "with me" during the sirens, there was also a military vehicle that was shooting blanks in addition to it's siren.  That was too much.  Last year the noise scared him and he cried.

Waiting for the parade to start.

This year he seized.  Seven minutes is a very, very, VERY long time to try to help your child.  I knew that EMS was right around the corner, but while his heart rate shot up and his sats went down, they were still within manageable limits.  And frankly, they would have transported him to the hospital, he would have been given some meds if he hadn't stopped by then, and they would have told us to follow up with his doctor.  We've already got an appointment with Comprehensive Care in another ten days, so really, 911 wouldn't have made much difference at that point.  (Although past ten minutes I would have enlisted help.  He just squeaked by.)

My cute tree hugger.

Saturday evening we had another picnic just a few miles down the road.  Michael thought the huge trees were incredible, and when we got home, Andrew decided to have some fun.




Aaron's big kids are just awesome!  I tell people Aaron has big brothers because they run with the wheelchair.  Mom doesn't even run without it.  He thought the spinning was the best thing ever!

And I'll put this out there in part because I use this blog to document and keep track of things.  Sunday night, Michael noticed that Aaron's pupils were uneven.  When he drew my attention to it, yeah, it was pretty obvious.  The right one was very small and non-reactive.  The thought is that it was residual from the seizure, or he had another one that we missed.  I'm afraid we're going to have to start chasing these things and try to figure them out.  I really, really don't want to deal with seizure meds.  There's not one out there that doesn't have ugly side effects.  But seizures in and of themselves are awful.  Just not something I want to think about.

And me?  Well, I've been trying to play catch-up on everything I was going to get done before he landed in the hospital.  I finally started making some onesies for Aaron.  He's about a size 7 and those things start at about $18 each for that size!  CRAZY!  I made him the floppy hat he wore at the parade.  The boys are creating their cowboy hats for trek coming up.  We got some vegetables and flowers planted, and are hoping the deer are willing to share the harvest with us.  I'm trying to get some kind of summer schedule put together for the kids here at home, and today I get to make an ice cream cake for Andrew, since he was supposed to have a birthday party last week, but yep, we were in the hospital.  At least it's only a week late, right?

So we're living life, sometimes sprinting, sometimes stumbling, as best we can.  A sweet friend put it so well when we were talking at the zoo.  She's lost two children, and a third is on hospice and not doing great, but he was there.  "If this is the last memory we get to make, at least it's a good one."  And we'll keep on making memories as long as we can.  

Memories are the treasures that we keep locked deep within the storehouse of our souls, to keep our hearts warm when we are lonely.

Becky Aligada

A Work in Progress

A couple weeks ago I got together with a bunch of other heart moms for dinner.  And a painting activity.  Talk about outside my comfort zone.

You should have seen her painting, the one we were supposed to recreate, more or less.

As we started painting, (and it was just the background) there were a lot of depreciating comments, and I recognized the mutterings around me echoed what I was feeling too.

No way I could make something like that.  Even the background wasn't turning out like she had it, and we hadn't gotten to the "real" painting.

But I was feeling a bit dark myself, and rebellious, and maybe not in the best place for feeling down on myself, or letting my friends put themselves down either.  So I said, "yeah, well, that's why she gets paid for this, and we don't.  But I bet she doesn't know how to hear a heart murmur, or tell if a kid needs more oxygen, or what to do when they do."

And you know what?  That's okay.  It's good that she can do what she does, and it's okay that we don't.  But our kids rely on us to do what we've been taught, and this was supposed to be a night of relaxation, or maybe discovery.

Her painting was a lot lighter than mine, but I wasn't feeling "light" at the time.  I made the sky dark,almost foreboding.  I was feeling it.  But then my words came back to me.  It wasn't all that way, and it wouldn't stay that way either, so I added in some lighter tones, just up in the corner, a bit of hope peeking through.  And you know, as I painted it, I was already thinking, "If I did this again, I would do it this way instead of that."  "I would make this line different, put that in a little bit of a different place."  And maybe we do the same thing in our own lives.  "I would say that different, I would go there instead, or maybe not go anywhere."  And that's okay, too.

There wasn't a single painting that looked exactly like hers, or like any other one.  But I can also say, I loved all of them.  They were all somewhat similar, a tree on a foreground with hearts, tones of reds, blacks and whites.  Kinda like all of us.  All of us in the room were bound together by hearts, hearts that weren't "perfect."  For some, it was our own heart, for many others, our kids.  We're on a journey we couldn't have known about before, but we embrace it, the fears, the joys, the triumphs and the sorrows all the same.

In the end, although I saw things I might change, I was pleased with my efforts.  And on the way home, I turned up my song loud, and sang it at the top of my lungs.

It's a work in progress, and so are we.

And Aaron, he's progressing, too.  The only thing we can come up with is that the cold he caught just over a week ago exacerbated both his asthma and his pulmonary hypertension to the point we couldn't help him enough at home.  We think we've turned the corner and are watching today.  It's been concerning for both me and the staff here that he has stayed quite high on his oxygen around the clock, whether awake or asleep, and he's slept a lot.  He's consistently needed 11-12, and sometimes a little more, liters of oxygen.  But early this morning we were able to wean him down to four liters, something very doable at home.  He bumped a little higher when he woke up, but he's still looking pretty good.  So we're hopeful that the end of this stay might be in sight.

Unless I accept my faults I will most certainly doubt my virtues. 

~Hugh Prather